I’m 20 years old and have struggled with my periods since they started at the age of 10. I was on the pill for 7 years but felt as though it changed me as a person (mood swings, depression etc) Ive now been off the pill for a year & a half and my ‘time of the month’ is a living hell, I’ve never experienced pain like it to the point I can’t walk or even move, vomiting from the pain and over dosing on naproxen as taking the advised dose doesn’t touch the pain. I’ve been back and fourth to the doctors and they’ve told me I have endometriosis but don’t want me to have the surgery to fully diagnose me as it can cause more problems. I’m getting told that my only option is to go back on the pill but that’s the last thing I want to do.
Is everyone who has endometriosis on the pill? If not how do you manage it? Is there anything else I can do or is that my only option?
Any advice is welcome, just feel so lost, confused and like I’m not in control of my own body
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Sweetheart420
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The pill is one form of treatment - hormonal, however it's not for everyone; I didn't suit the pill the side effects were horrible and I would never go back on it. Hormones can be used to control growth of endo / provide relief of symptoms / ease symptoms. But it will not stop growth; endo can grow and perforate organs if left.
It's useful to remember the amount of endo doesn't correlate to the intensity of symptoms, so some women can have a small patch of endo and awful symptoms. Endo will always grow, it's just different rates for different women as it's dependent on so many factors.
There are other treatments; the main one always needed at some point is a laparoscopy to excise (cut out) the endo, which although invasive does remove the endo thus helping with symptoms for a limited amount of time; endo always regrows. Surgery though can prevent complications with other organs and help control the endo. Some women find hormones after surgery does help with any additional symptoms.
The first thing is to make sure you're referred to an endo specialist, as general gynae don't have the experience to know how to treat endo other than hormones as that's what they'd use for most other things. Also an endo specialist will know to look elsewhere for endo such as the bladder and bowel which general gynae won't consider as their expertise is just the reproductive system.
If you haven't already you should really have a diagnostic laparoscopy by an endo specialist so they can visibly see the extent of the endo and formally diagnose it. It isn't going to cause more problems - contrary to what your doctor says - because an endo specialist will know how to excise the endo without affecting the function of any organs also they'll be more keen to do the lap as they'll want to find out what's causing all your symptoms rather than just covering it up with chemicals. General gynae quite often won't do the surgery because they can just keep giving us hormones and don't need to worry about the actual cause.
Next really read up on Endometriosis; look up as much information as you can. A good place to start for treatment is NICE Endo, it gives the process doctors should follow for endo
I have a book which I've found helps so much as it goes through all different aspects of endo including case stories; symptoms, choosing a consultant, diagnosis, treatment, hormone side effects, complications, comparisons, diet, alternative therapies.
Living Well with Endometriosis: What Your Doctor Doesn't Tell You...That You Need to Know
by Kerry-Ann Morris
It's available on Amazon
I posted my story a while back it could give you some insight:
I've had excision for my endo and now managing without hormones, like you I do not want to go back on them. I'm aware mine will regrow but at least I know what my symptoms are without adding chemicals to my body!
Thank you so much for your lovely response! Honestly made me cry a little bit as I’ve never spoken about this to anyone other than my partner and being a male he obviously doesn’t understand. It’s so nice to speak to someone who knows exactly what your going through!
I’m currently waiting to go for scans but I’ve had these before and they always come back clear (I know endo doesn’t show up on scans).
I’ve had enough of my doctors to be honest they were so resilient to even send me to a gyno that I doubt they’d send me to a endometriosis specialist but I’ll definitely look in to seeing one privately!
Thank you again for taking the time to reply to me & for all your useful links and advice. & Thank you for not making me feel alone❤️
Aww, no problem! We endo sister support each other, it's a difficult world out there!
Private - Some workplaces do have medical insurance which you can use, I did that for mine. I know you can also see a private endo specilaist and then be asked to go on their NHS waiting list, this way you only pay for the consultation. Some private centers do payment plans. Also as you've not had endo formally diagnosed by a lap then you're still classed as a new condition therefore can take out your own private insurance (something like BUPA), there's lots out there. I'd recommend private if you can manage say a monthly payment (like any other insurance), because the wait times are so much less; you book things including any operations when you want them, and your specialist sees your for everything including the ops, they also spend an hour at each consultation.
To get men to understand - because they don't lol, once you've got your specialist appointment take your partner along. Mine found it really helpful, and they feel involved, plus they can ask stuff like how they can help, what they can do - men are practical and as this is something to do with just us they feel helpless. Doesn't help that we're generally not open about stuff either. Suggest some websites he can read, or that book!
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